I realized today, really realized in my gut, that I can't save Flip. My husband is gone, and there was no precise moment in time when I could say goodbye and gain closure. His expression is mostly blank, he seems unaware when his diaper needs changing, and he walks in a half crouch like a giant praying mantis. I can still visit him every day and take him small comforts and treats, but I cannot hold back the force of this disease which is destroying him.
The occupational therapist told me that his is "a very complicated case." His symptoms don't fit the parameters of any specific disease so it is unclear at this point whether he has Alzheimer's, Parkinson's, Lewy Body Dementia or some bizarre combination of these with perhaps other components as well. My own body aches with mostly unshed tears. I think I'm afraid that if I start crying, I won't be able to stop.
It's horrifying to think that he may have been misdiagnosed all these years, and that he could have been helped before it reached this point. His neurologist of the last four years specializes in Alzheimer's, so perhaps she sees Alzheimer's in all her patients, as when you're pregnant and suddenly the world is full of pregnant women. You drive a red car, and every car on the road is red. The newest research confirms a genetic link to Parkinson's, and since Flip's father and sister had it, it seems likely, especially considering how early it manifested in him. To be fair, I took him to several neurologists before we settled on her, and all concurred in the diagnosis. Of course, he hadn't yet begun to exhibit the symptoms which suggest Parkinson's. Even the best of doctors can't diagnose what they don't see. I hold them all blameless.
He has an appointment with another neurologist, his 6th or 7th, in October. I don't think anything can change the course of his illness now, but all knowledge is helpful to some degree. Flip said "Susy" very clearly today, but the rest of his sentence was lost in translation. He deserves a Medal of Honor for not exploding with frustration at his inability to express himself. I couldn't do it.
It is time to take myself in hand. Most people eat too much when they are stressed but I am the opposite, a compulsive starver. I only have an appetite when all the signs are right. When I was a child, I read a book called "The Story of 100 Operas" and thought the Aida story the most romantic of all. At the end, when her lover is in a tomb with the walls closing in on him, crushing him to death, Aida jumps in to die with him. Many of my previous relationships reflected that view, sadly. Flip would not want this for me, and as it turns out, neither do I. So I am going to do the most life-affirming thing I can think of, short of buying shoes. I am going to hunt down a piece of chocolate cake with mocha buttercream icing and eat every crumb. If it's the last thing I do.
33 comments:
chocolate cake is very very life-affirming!
My mother has parkinsons for 11 years now. Her father had it. I fear I may be next. It can work quickly or slowly, but the end stages are dementia. Like Alzhemers, symptoms can be managed but not cured. It's all so variable and dependent on who has it.
Dementia and illness may take away the husband you knew, but he is still your love, someone you are devoted to and to whom he relies upon for his care and safety. You are his champion now.
Go find that perfect chocolate cake!
Parkinson's is so variable, it is understandable if neither you or the doctors were sure what was going on. My father in law was diagnosed in his thirties and lived to be sixtyish, with a clear mind until the last few months of his life. My step father was diagnosed about seven years before his death in late life, and was mentally incompetent the last two years at least.
My husband's case was complicated by the fact that he had a work related hand injury, a slight stroke affecting his right hand, arm and leg (which he didn't realize at the time), and started exhibiting the physical symptoms of Parkinson's all about the same time. For a while, when he would complain about things to his primary care doctor, who saw him only two or three times a year, seated, he would be reminded that they were both about the same age and it was catching up with them.
I knew he was different, his posture was off, but he was near sixty, and had worked in a factory for 34 years. When the slowness of dressing, the stooped posture, sometimes blank expression, etc., started setting off alarm bells, I sent him back to the doctor with a list, and he was told it was time to see a neurologist because he might well have Parkinson's. Since then, two different ones have said he is a textbook case.
Like you, I wonder that my husband handles things as well as he does. Ten years ago, he spent two years being tested because he couldn't breathe, finally to be diagnosed with a hole in his heart. During what should have been simple open heart surgery to repair it, there were complications restarting his heart and he had a second operation while on the table. This past winter he nearly died again. He couldn't breathe and was being treated for bronchitis. By the time I got him to the ER it was a miracle he was still alive, as he had clots in his lungs and heart both. I don't know that I could face going through all he has had to with as much patience and grace.
You are in a hard place right now and I wish it didn't have to be this way. I hope memories of the "real" Flip will sustain you through whatever the rest of the journey is. He is lucky to have you and you should eat cake, or anything else you want, with a clear conscience.
I vote for chocolate cake and shoes. You deserve both.
Flip's rapid decline is truly dreadful. And equally dreadful to know there is absolutely nothing you can do to halt or reverse it, all you can do is watch his gradual deterioration. As you say, there must be a bottomless reservoir of tears waiting to be shed. Chocolate cake sounds like a very practical response. And maybe buying shoes also.
You've been through so much. If the place of purchase knew your story, I'm sure that whole rich, dark chocolate cake would be free of charge with extra lashings of mocha icing.The way you have dealt with such stressful and painful emotions on this roller-coaster journey is astounding. You must be beyond exhausted.
The clarification and acceptance of "What now is" in this post is both heartbreaking but sadly affirming at the same time. You have my utmost admiration. Enjoy every damn bite of that cake girl!!.I'd be squirreling it home and downing a wee dram of whisky with it!
You deserve a dozen chocolate cakes for what you've been through, and shoes, too...
Eat every morsel!
I am going to have some sort of cake tonight too, as a show of solidarity.
Because I truly believe that although I can't imagine the mix of emotions,and the pain you must be living, I am still there with you from way over here on my side of the deep blue. Besos.
You probably do not know this about me Susan but the last time I cried was when my wife left and took my two infant children with her. That was 28 years ago. I knew that night that my life had changed in ways I never ever wanted or considered and whether because I believed it so or it was just the way things turned out I never had a chance to parent those two kids.
I had to trust that the man she married a year or two later was going to love them and be the parent I could not because of circumstances beyond my control. My trust was not in vain, he is a fine man.
So in some small way I understand perfectly what you say about finally realizing that Flip is not somehow going to come back to what he was and that is a great loss, especially because every time you put fingers to keyboard the love just comes through. I can only wish that my life went down a different road too, yet it did not, and for that I used to have great regret. Do not make that same mistake of regret that there was not more you could do.
Cry ten thousand times ten thousand tears, not because it will change anything one wit but it does cleanse the soul, it is all right to mourn at this point and in your own way do what you can to make his physical being more comfortable. Get two pieces of cake Flip may remember how much he liked the sweet tooth or other treat.
I guess what I am trying to say even though I barely know you is that of all the people on this earth I admire you, more than most. Your strength, your ability to get angry, your ability to see things in situations no one else sees. The truthfulness of how you share not only this tragedy but things like your (hopefully gone) stupid ass next door neighbor and so much more.
You may not be able to do Flip much good with his cognition but you are not giving in or up. And in that my friend I just want to say three words I rarely say to anyone because I rarely see a reason for them in most of humanity-I respect you.
Have your cake, enjoy every last morsel, for just those few minutes think of no one but your own self and thank that spirit within you that you and Flip found each other and then as the last crumb of chocolate slides easily down your throat and savor the taste of not only the cake now gone but also the wonder of the man you came to love even more than chocolate.
Be at Peace
mark
Everything I could try to say has been said above, by others, more eloquently.... I hope you enjoy every crumb of that cake and that it helps. My heart breaks for all those bottled up tears of yours though....
Tara,
Maybe I'll eat some tomorrow. I went out and then found I really had no desire for anything but sleep, so I am giving myself a rain check on that cake.
Paula,
From everything I've read, Parkinson's symptoms vary enormously from person to person. Flip had memory problems for a few years before his AD diagnosis, but was told it was "just stress" because he was so young.
I'm so sorry for all you and your husband have been through. It boggles the mind that he has survived so many incidents, so he must be very strong. I have no doubt that your strength, too, is phenomenal. Good luck with your continued struggle.
ER,
I like your attitude.
Nick,
It's harder to watch every day. I feel so helpless, and I have never liked that feeling.
Pam,
Chocolate cake and whiskey sounds like an excellent remedy, if only I were a drinking person. I've never developed a taste for liquor and am allergic to wine, which I do like. But I have often thought how comforting it would be to lose myself in a bottle of something.
e,
Thank you for your fine advice, and when I weigh 500 pounds, it will be all your fault.
Eslocura,
I'm so glad the hurricanes didn't get you. Hang in there, and please do eat cake in solidarity with me anytime, and often.
Abrazos
Mark,
Hearing about the loss of your children makes me want to cry, too. I'm so sorry for all that. Once again you have proved yourself to be unusually caring and selfless by being able to appreciate their stepfather's kind treatment of them. It's very rare, and everything I know of you makes me respect you, too, more and more.
You are right in all you've said here, and the truth is that even if I had known this was coming, I would still have married Flip. I can't imagine why we have had to pay such a high price for our happiness, but I suspect it has to do with balance. Life seeks balance in all things, and we were extremely happy together, so now we are unhappy to the same degree. Or maybe life is just capricious and like insects, we do the best we can to survive until we can't anymore.
Sending the most loving thoughts to you.
Molly,
If I ever unleash them on the world, the waters will rise everywhere, and we'll all be eating cake in hip waders.
Did you already find the cake and eat some of it? I hope that is symbolic of the fact that you are now going to definitely be aware of how you are treating yourself. You love Flip, you have all but walked in his shoes for such a long time. You are doing the best you can to be involved in his care and protect him from life's unfairness while seeing to his care. If we are not living your life we have no idea of the reality of your every day and every minute pain. You are in our thoughts often and we are sharing the cake with you in spirit.
I am so, so glad to hear this - I've been worrying about you not eating because I do the very same thing when I am anxious or grieving. At this point taking care of yourself is the only sane thing to do.As for crying, we have an endless supply of tears. I'm a believer in crying.
Is there anyone local who can sit with you while you experience some of this grief? Someone who can hold you and let you cry or not cry, talk or not talk?
Not trying to be glib or witty but using your own imagery, I would like to say that all of us would be happy to share chocolate cake with you in hip waders if that means you can release the tears that weigh so heavily when remained bottled up. As Mark said, you have our respect and you have our love too.
I hope you have eaten the cake by now. Please be kind to yourself.
My love to you and Flip, Susan. I'm very glad to read that you are at least thinking about eating again -- and I hope by now you have done so. I was also glad to read that you were getting some sleep. And I'm positive that if you let yourself cry, you will eventually stop... and then sleep and eat perhaps more easily afterward. Love love love.
I hope you are able to find that cake! Life affirming actions are good things at times like these.
My mother had that "speaking real words, with inflection, but in a nonsense order" thing going on. I would find myself tensing up and leaning in - as if by putting more effort into listening, I'd be able to break her code. So sad.
You are in my heart.
Babe,
No cake yet - I found I just wasn't into it after all. But I went to the farmers' market this morning because if anything can tempt me to eat, it's fruit and veggies.
Agent,
When I was six, my great-grandfather died and my parents took me to the after-funeral gathering at which food was served. I asked my mother if it was right to eat when someone had just died, and she said, "Grandpa would want us to eat." But even then grieving and eating seemed incompatible to me. I'm trying, though.
Tanya,
I'm sure there are people if I would only ask.
Calvin,
The image of a squirrel in hip waders makes me smile. Thank you for the solidarity. What greater compassion could anyone have than to eat chocolate cake with another?
Paula,
It's still in my future, but that's a good thing, right?
Lisa,
Thank you. All who know you in any capacity are blessed to have you in our lives.
Elaine,
How sad about your mother. I have often succumbed to the magical belief that if only I try hard enough, I can do (fill in the blanks.) But sometimes it isn't possible, despite my best efforts.
Thank you for always being a truly wonderful real-life friend.
whatever disease(s) Flip has been diagnosed with does not take away from whatever the disease is that is eating at him. It can be called a million things, he can take a gazillion drugs but the blackness is still there. You have done all you can, the doctors (for the most part) have acted in good faith and Lewis has been cruel and unjust — whatever, whomever Lewis is.
You have hit upon the perfect cure of this Sunday -- chocolate cake. I prescribe two pieces daily. And a pair of shoes.
Dr. David
sometimes the hardest lesson to learn in times like this is that your life goes on. It is no disrespect to Flip to acknowledge that you have to continue living. After all, your ability to advocate for him is diminished if you do not keep your health up.
I hope that you found something at the farmer's market - and ate it.
Oh, Susan, that is precisely why God invented chocolate.
I wish I could say more to help you feel better. There is just nothing to say...
I watched an interview yesterday with some of the widows of 9/11. They all said that, at the time of 9/11, they thought they could never go on with their lives again. But somehow their lives did go on, just in a slightly different way. I think Flip would want your life to go on. He loves you as much as you love him.
Prayers go with you dear friend.
Oh my. I have not been to your blog in a while, and I did not know your husband's condition had gone this far. My prayers (to whomever)and thoughts are with you. I can't imagine watching your beloved one go through this.
J.
David,
You are my kind of doctor. But is it ok if I don't eat the shoes?
Bob,
The farmers' market is always good, even a visual feast. It's one of my weekly pleasures. Since life is made up of moments strung together, I do think we should make as many of them pleasant as possible.
Jo,
I know that Flip would not want me to give up living, but I'm very sad that we can't go on living together as we always planned to do. I think I'm still hoping for a miracle.
Ian,
Thank you for that.
Voyager,
It's so nice to have you here again. It's unbelievably painful, probably the hardest thing I've ever had to do.
Little pleasures like this one (chocolate cake) are monumental in the face of facing the unthinkable. Eat the whole cake, not just one piece.
Remember that each day counts; each one is priceless and try to find at least one good thing in it; you already live this way, finding good in things that seem coated thickly in black veneer.
Find one good thing, at least, every day, because at some point these days will be gone; shadows and memories, and you'll want the good things to shine like stars in the dark night of these days.
Much love, hope and peace.
And piece of cake... chocolate.
Good girl.
XOXO
Scarlett & Viaggiatore
Choose life - and pass the cake, dear friend
Aloha from Waikiki;
Comfort Spiral
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I think you have the right idea about taking care of yourself. Your post is actually a positive one, some inspiration for others.
The confusion about diagnosis seems somewhat common. My Dad received several different ones, and in many cases I think the doctors just aren't exactly sure. No easy answers sometimes.
going thru similar thing with my mom, in a home with some good people and some wheelchair bitches... although I don't get to see her much, living two states away and broke. sorry to read about the care home troubles... yikes! Yes, pass the chocolate! moments of private, guiltless, unburdened bliss are so necessary!!!
I tend to react as you do. When I am upset or stressed, I either forget to eat or have to force myself. Since I am diabetic, my body reacts strongly if I don't keep my blood sugar up.
Bing has helped me immensely with this and since Flip isn't with you to help, try this: just tell yourself that you will treat yourself to one bite. Buy a cupcake instead of a cake. Bing would look at me and say, "All you need to do is take one bite." I'd do it and savor it.
Ginger snaps are always a good treat for me because they are small and settle the stomach after they are eaten. Try one. Seriously.
How fortunate that you enjoy fruits and vegetables. At least you will be healthy.
Thanks for the comment on my blog and I will tell you a secret: her name isn't really Bambi. It's um...Fawn. Not much better, huh? But, I always change up people's names. I try to pick one that either rhymes or is similar in some way and Bambi fit the bill.
Scarlett,
Thanks for your words of encouragement. It's kind of like learning to function again after an amputation, with apologies to those who have had actual, physical amputations, because that is how it feels to me. While I never lost my identity, the unit Flip and I created together was better. I miss him, and I miss us.
Cloudia,
I'll bring the cake and we can have it on Waikiki Beach. Deal?
Skinny,
I learned early on that the only definitive diagnosis for Alzheimer's was autopsy, so that may well be true of Parkinson's and other forms of dementia. Someday they will know more than they do now - we're still in the Dark Ages of medicine concerning some diseases.
Laura Lee,
I'm sorry about your mom, and the fact that you can't see her as often as you would both like. Most of the residents seem really batty in one way or another. My big triumph was outwitting the guy who stole Flip's eyeglasses and prescription Ray Bans - it took me two weeks to figure out who had taken them but when I did, I got a nurse to retrieve them and stored them up high in Flip's room, above the reach of a guy in a wheelchair. Sometimes you just have to be mean.
Maria,
FAWN? Dear God, you did her a kindness. Bambi merely sounds like a Playboy bunny, but Fawn? Her parents must have been terminally high on cutesy. I should never complain about bland Susan or even ugly Roberta again.
I love ginger in any form at all. I am disappointed that I can't get Peek Frean's Ginger Crisps in SF, and the only store in the city that carries Ginger Altoids hasn't had them for weeks. I am jonesing. Carr's Ginger-Lemon cookies are pretty good, Anna's Ginger Thins so-so. I eat pickled sushi ginger with everything - when I am in eating mode. Which I'm not. Even the fruits and veggies are mostly rotting. I need to be jump started, and think you and Bing should hop on a plane and come out here.
My heart breaks for you. Truly breaks. I'm so sorry. When I think of all the horror and all the pain you've been through and how much you love, I wish there was a better way to say how I feel than 'I'm sorry'
My heart breaks for you. You and Flip remain in my thoughts and prayers.
Having a good cry here--and wishing it would help burn off some of your unshed tears.
In short: ah, dammit. There aren't words.
You and I suffer from the opposite reactions to stress, but our hearts both feel pain. May the chocolate cake have slid down easily and given some satisfaction
I'm so sorry, friend.
Claudia,
I appreciate the support. It helps so much.
Jocelyn,
Thank you for offering to do all that crying for me. It's a rough job but somebody's got to do it.
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